Support resources for families dealing with cancer and other serious illnesses

I find myself wondering whether the right to a PET-CT is granted to everyone diagnosed with a malignant tumor, or if it depends heavily on the specific stage and severity of the condition. In my case, I’ve been diagnosed with ClarkIII Braslov ii melanoma; my markers look decent, but honestly... who can say for sure?

I recently visited the Melanoma Center at the local university hospital, and while the experience wasn't exactly what I would call "happy," I am hoping for a better outcome during my next appointment.

Does an oncologist have a legal obligation to provide a referral for a PET-CT if I specifically request one? Does anyone here happen to know how that process works?

On a separate note, does anyone have a comprehensive list of the various markers used to track melanoma?

I realize I am asking quite a lot, but I have my check-ups scheduled for tomorrow, and I would dearly love to have some clarity before I sit down to face them. 😁😁

Furthermore, my heart truly goes out to everyone who has endured the loss caused by this devastating disease. I understand that pain intimately, having lost my own brother to colorectal cancer when he was only 34 years old.

As a small piece of practical advice, there is a type of nutritional supplement designed for patients that looks somewhat like chocolate milk—brands like Ensure or Fresubin (or similar products from other manufacturers). These can actually be obtained via prescription, so please do ask your doctors about them, as many aren't even aware they exist. They are available over the counter as well, though I believe they cost around five or six dollars per unit without a prescription.

Susan Harris89 said:I'm wondering if everyone diagnosed with a malignant tumor is entitled to a PET scan, or if it depends on the stage and other factors. I have ClarkIII Braslov ii melanoma; my markers look good, but honestly... who knows?

I went to the Melanoma Center at the hospital in Washington, D.C., and I wasn't exactly thrilled with the experience, though that was a different occasion.

Is an oncologist required to give me a referral for a PET scan if I ask for one? Does anyone know?

Also, does anyone know all the various markers used for melanoma?

I know I'm asking a lot, but I have checkups tomorrow and I'd love to have some answers before I face them.😁😁

On a side note, my heart goes out to everyone who has dealt with the loss caused by this terrible disease. I know exactly what that feels like because I lost my brother to colon cancer when he was only 34.

As for helpful tips, there is nutritional supplement food for patients that looks a bit like chocolate milk called FRESUBIN or ENSURE (similar products exist from other brands). You can get these via prescription—ask your doctors, because a lot of them aren't actually aware of them. They can be bought over the counter too, but I think they cost about $5 a bottle then.

I assume you're asking about getting a PET-CT. If your condition is under control, this scan doesn't really make sense; it's incredibly expensive and is primarily used to determine or monitor a treatment plan, especially for patients with diagnosed metastases. Besides, these scans often pick up tiny, benign cellular changes that end up causing people unnecessary, irrational anxiety. In your case, standard follow-up CT scans should be more than enough to monitor your status. You should discuss all of this with your attending physician, since they are the ones managing your case. That said, any oncologist can prescribe a PET-CT, just like any other scan—unless you go to a private clinic, in which case you'll be footing the bill yourself instead of having Medicare cover it.
Regarding the Melanoma Center, you aren't the first person to have a bad experience there. Honestly, it’s a disgrace that a place operating at that level is even called a "center." ☕

amberheron11 said:I didn't want to say anything until I had read at least ten pages of this, and now I feel ashamed for even deciding to share my story.

My grandfather has pancreatic cancer; it's spread to his liver and is slowly moving toward his lungs. Chemotherapy did nothing, and surgery was used to do everything possible, but the prognosis was originally six months—though every day it becomes clearer he won't last longer than a month.

In a way, part of me is relieved, just so he can get it over with quickly and not suffer.
I haven't come to terms with it yet; I’m one of those people where this stuff hits you much later, once everyone else has already finished grieving.
And during this period, nobody understands why I don't cry, why I seem so cold, or why I'm not mourning alongside them (my extended family),
instead, I'm just flying around the house. With everyone, but with no one.

My grandmother passed away two years ago from colon cancer; metastases everywhere, and she died just 17 days after the diagnosis.
She didn't want to burden us with her problems, but she had been showing symptoms for years, which we only found out about after the fact.
She didn't know what was happening to her until the very end. The doctors and the family agreed there was no point in telling her anything, because it would only make her sink faster; she couldn't have handled it, not for herself, but for our sake.

My other grandfather died six months after her. He’d been on dialysis for years, complications arose, cancer stepped in, and that was the end.

Back in 2004, my mom had breast cancer surgery—one breast removed, followed by chemo.
As a precaution, they removed her uterus and both ovaries two years later (she didn't want kids anymore—she was 44 then—so they suggested removal since the main issue was excess estrogen leading to the breast cancer).
Thank God, all her tests have been clear ever since.

My great-grandmother also died of cancer (uterine cancer).

Sometimes I feel like it's just a matter of time before one of these things hits me,
and as for preventative screenings... I don't know, I don't know if it's too early. I'm 20, and my parents are only thinking about this now,
trying to explain how it works to me while my grandfather is sick, because I honestly don't know where to start.
Now, I'm even feeling guilty because it feels like "I'm only thinking about myself."

Dear namesake,
when it comes to malignant diseases, your genetics are definitely not playing on your side. However, all of this can be kept under control by maintaining a healthy lifestyle and ditching the bad habits your family members had. It’s been shown, for instance, in studies of adopted children, that they mostly develop the same illnesses as their adoptive parents rather than their biological ones. In other words, an acquired lifestyle can dictate the development of the same disease.
Live healthy and go for regular preventative breast exams and gynecological checkups, and once you hit 40, make sure you get your first colonoscopy.

@Angela Wright/">@@Angela Wright, I truly appreciate you taking the time to get back to me. :-)))

I shall endeavor to provide more specific details in the coming days! 🙂

Let me attempt to recount my experience at the melanoma treatment facility in Beverly Hills. Beyond the fact that everyone there seems perpetually irritated, the interpersonal dynamics are a total catastrophe—honestly, I would lose my mind if I were forced to work there. It feels as though every single staff member is merely looking for an exit strategy, attempting to shuffle their workload onto someone else. As for the patient? One wonders if anyone even recognizes the concept of a patient anymore, or why they should bother being inconvenienced by one in the first place. 🙂
Everything you might have read about them in the papers is an understatement; the reality is significantly more grim 🙂

I was under the care of Dr. Smith at the melanoma center, and I certainly would not recommend her. To clarify, I wasn't seeing an oncologist; she is a dermatologist, and she failed to refer me to an oncologist at all, even when I explicitly asked if such a referral was necessary. Of course, it was required 🙂, but I only discovered this when a surgeon lost his temper because I hadn't been cleared by oncology 🙂

To provide just one illustrative detail from this ordeal: she barely even looked at me. She spent the entire time examining a resident (who is actually lovely), yet she keeps the dermatoscope tucked away in her own pocket rather than letting the resident use it. In my estimation, if a resident is conducting the examination, the tool should be made available to them, rather than the specialist hoarding it in a pocket while the trainee struggles. Whatever.

To make a long story short, we completed all the preliminary tests, though they bypassed anything substantial like a CT scan in favor of much more rudimentary ultrasounds and other basic diagnostics. I waited an eternity—a full month, in fact—for my marker results. Eventually, once they admitted me for inpatient treatment to run everything (which was fine), I followed the nurse's instructions to head home. When I asked the nurse—who is truly wonderful—about my results, she simply said they were "okay." I asked, quite pointedly, what she meant by "okay," and how she could possibly expect me to just go home without a physician interpreting the findings. The nurse replied, "Not a chance, honey!" So there I was, standing at the door the next day feeling utterly stranded. I finally caught up with the doctor and requested that we sit down to discuss my case and interpret the results. Her response? She told me I wasn't her patient. I insisted that I was. She doubled down, claiming I wasn't. I argued, "Ma'am, I am! You discharged me from the hospital yesterday and examined me just three days ago!" She maintained her stance until she demanded to see the paperwork. Once she saw her own official stamp on the documents, I must admit, I detected a flicker of genuine embarrassment in her eyes.

And that is supposed to be a physician? Someone who sends a person facing a malignant diagnosis home via a nurse, makes no effort to explain the findings, and then denies ever having met the patient when they ask for a consultation? Don't get me wrong, regardless of whatever salary they are paying her, it is far too much; she hasn't earned it. If anyone believes she is a sound choice, feel free to seek her out, but I cannot, in good conscience, recommend her. I am posting this deliberately, knowing that she—or perhaps her nursing staff—could easily track this thread down, as I am certain she remembers this particular humiliation quite vividly. In that case, I say: save your breath! 🙂 And if she fancies filing a lawsuit over what she considers baseless slander, well, we shall see who possesses the superior legal counsel.

Incidentally, I recently noticed a report mentioning that there is a private dermatology clinic or practice owned by Smith in New York City. I suspect it belongs to her or perhaps a family member, and I imagine if I had gone there, she would have remembered not just my surname, but my given name as well. 🙂

Susan Harris89, I like your style😍...you want to join our Association and become one of our "ninjas"?😉 You’ve got exactly the kind of energy we’re missing. We’re going to go head-to-head, just to see who’s got the sharper wit and the better memory 👍

He, he, he, thank you so much 🙂 I was already anticipating being torn to shreds by everyone because of how I presented my thoughts 🙂 But what can I say? This is just who I am, and honestly, I’ve been giving some thought to starting my own Association... though I haven't quite figured out the where, the how, or the why just yet. I have this nagging fear that I might end up doing more harm than good for all of you, hahahahaha. Honestly, forget it. My ambitions have shifted toward becoming the Secretary of Health or perhaps even running a major hospital system 🙂 I hear there is a postgraduate program for that kind of thing in San Francisco; I could always enroll and then proceed to commit professional suicide over at Beverly Hills. If I were to implement an old-school, rigid Austro-Canadian management model there, they wouldn't know what hit them 🙂 I am genuinely considering it, I just haven't settled on a specific direction yet 🙂

Susan Harris89 said:Haha, thanks 🙂 I was already bracing myself for everyone to spit on me because of how I present things 🙂 But hey, what can you do? This is just who I am, and honestly, I’ve been thinking about starting an Association myself... I just haven't figured out the where, the how, or the why yet. I'm actually terrified I might end up doing more harm than good, hahaha. Whatever, let them come at me. My big ambition now is to become the Secretary of Health or a hospital director 🙂 I heard there's a postgraduate program for that in San Francisco, so I could enroll and then go commit career suicide over at Beverly Hills. If I tried to implement an old-school imperial management model there, they wouldn't know what hit them 🙂 I'm seriously considering it, I just haven't made up my mind on the specifics 🙂

An Association would be a perfect fit for you. You'll learn the art of diplomacy—how to wrap that rebellious streak of yours in fancy packaging to get exactly what you want. And of course, you'll learn when it's necessary to play dirty, which is why we need people like you.
www.zanovidan.com Check it out to see what's going on. There's an archive of news, basically a crystal ball.
We desperately need activists! Everyone is happy to volunteer or sell some badges... sure, that's all well and good, but three little sheep aren't going to survive among a pack of wolves up there.

Hey there.
A year ago, I got hit with papillary thyroid cancer. After the surgery, I had to deal with radioactive ablation and constant checkups. Now, my next radioactive iodine scan is creeping up on me, and to put it mildly, I am absolutely terrified.
I’ve barely said a word for days. My husband keeps asking what’s wrong, but I just can't bring myself to talk about it. I'm paralyzed by the fear that it might have spread or that the treatment isn't actually working. And I'm only 26. I know, I know—it sounds selfish. There are kids out there fighting this, people dealing with so much worse... but God, I am just SO SCARED!!!!!!😢😢

Angela Brown80 said:Hi everyone!
A year ago, I was diagnosed with papillary thyroid cancer. Since then, I’ve gone through surgery, radioactive ablation, and constant follow-ups. Now, my next round of radioactive iodine treatment is creeping up on me, and to put it mildly, I am absolutely terrified.
I haven't even been able to speak much for days now. My husband keeps asking what's wrong, but I just can't bring myself to talk about it. I'm paralyzed by the fear that the disease might have spread or that the treatment won't work. And I'm only 26. I know it sounds selfish—there are sick children out there, people facing much worse than this... but I am just SO AFRAID!!!!!!😢😢

They say if you're destined to deal with cancer, thyroid cancer is the best-case scenario. It’s highly treatable and rarely spreads aggressively elsewhere in the body.
Once you're staring down a cancer diagnosis, you really have to accept the reality that a recurrence is a possibility; you have to learn how to shoulder that fear. You have to learn to live day by day and truly embrace every single moment, right here and now. You deal with things as they manifest on your path, if they ever do. That’s the golden rule of life, and honestly, everyone should live by it—whether you're healthy or fighting an illness.

amberheron11 said:Sometimes I feel like it’s just a matter of time before one of them comes for me.
And preventive screenings... I don't know, maybe it's too early? I'm only 20, and my family isn't really thinking about this stuff right now.
With my grandpa being sick, having to explain how all this works to them is exhausting because I honestly don't even know where to start.
Now I'm sitting here feeling guilty because it feels like "I'm only looking out for myself."

Hm, sounds heavy. But look, the good news is that prevention works wonders. My advice? Go find some solid books on nutrition and fighting cancer.

Besides, plenty of studies show that lifestyle—diet, stress levels, staying positive—is a way bigger factor than people realize. Genetics plays a part, sure, but it's not everything. Take The China Study, for example. It showed that in China (which is pretty genetically consistent with the Han population), people living in rural areas have about a fourth of the risk of getting cancer compared to those in coastal urban cities. A huge reason for that is diet; since they're lower income, they eat tons of greens, which is incredibly healthy.

velvetmarlin17 said:Hmm, sounds serious. But look, the silver lining is that prevention works wonders, so I’d highly recommend diving into some solid books regarding nutrition and fighting cancer.

Beyond that, countless studies have proven that lifestyle choices—things like what you eat, how you handle stress, and even your general outlook on life—play a much larger role than people give them credit for, while genetics actually play a smaller part. For instance, the famous The China Study showed that in China (which is genetically homogeneous, with the Han population making up about 80%), folks living in rural areas have roughly four times less chance of developing cancer compared to those in coastal urban centers. It mostly comes down to diet; one major factor is simply that they are lower-income, meaning they consume a massive amount of leafy greens, which is incredibly healthy.

Schreiber also brought up this exact study in his book "against cancer." He pointed out how men who showed high markers for prostate cancer—even without having developed the disease yet—almost always saw the illness manifest once they moved from rural areas into the city for work, purely because their lifestyle and diet shifted so drastically.

A few years back, someone on this forum mentioned Elaine Hollingsworth’s book: "Take Control of Your Health and Escape the Sickness Industry."

Back then, you could actually snag an e-book version for free. I haven't read a ton of stuff on this subject, but her take? Honestly, felt pretty revolutionary.

My buddy passed away today. I just can't wrap my head around it.

George Sullivan31 said:My buddy passed away today. I'm still in shock.

Sending you my deepest condolences.
I lost my dad just last month, and after I posted about it here, I basically vanished from the forum.
Coming back now and seeing two more people going through this... man, I am truly sorry.
After dealing with all this, nothing scares me anymore except for things like cancer, liver cirrhosis, or leukemia.
The common stuff? Like the flu or a cold? Doesn't even register on my radar anymore.

My mother passed away just a few days ago. It was all just... devastating. The pain—we couldn't even manage to control it properly with the patches—the hallucinations, the incoherent rambling... her body was literally wasting away to the point where she felt like nothing more than skin and bone. I’m not exaggerating; I don't think she weighed more than 65 or 70 pounds at the end. Honestly, looking back, even the most extreme cases of anorexia you see online looked healthy compared to this... 😢 It’s going to be so hard to move past it, that awful stretch right before the end. I feel like I could write a whole book about it; there was just so much happening in such a short amount of time. I think I'll need quite a while to just "process" everything and find some peace. Our lives have completely flipped upside down. It’s just been the three of us kids and my dad, who, frankly, has never even washed two dirty dishes in his life...

I suppose this should probably be moved to the "other" thread meant for stories like this...

Anyway, I’ve been thinking that I’d really like to get involved with the Association's work, but I’m not sure if it makes sense. You mentioned needing activists rather than just "passive" supporters, and since I’ve only just turned eighteen 🙄, I’m not exactly an extrovert (not really 😁 at all), and we haven't actually had any specific bad experiences with the healthcare system that would give me a reason to rally. I guess I don't know what else I could contribute? On the other hand, being from New York City might be an advantage.
How does one even get started? Do I sign up through www.zanovidan.hr, and then what happens after that?

Angela Wright said:Look, markers on their own aren't a foolproof diagnostic tool. They’re mainly used to track progress during treatment—basically, doctors use them to see if a medication is actually working or to flag a suspicion of illness.
Markers are almost never at zero. These specific values are completely normal.

My mother had surgery for breast cancer five years ago. Over the last year or two, her markers have started creeping up again, increasing by about 2 or 3 points each time. Last time, they were right on the edge (24, with a limit of 25), and now they've hit 27. Is it possible for them to steadily increase like this without it meaning the cancer has returned? Thank you...

Grace Flores14 said:My mom passed away just a few days ago. It was all just horrific—the pain (which we couldn't manage properly even with the patches), the hallucinations, the rambling, her body literally wasting away until she was nothing but skin and bone. I’m not exaggerating; I don't think she weighed more than 65 or 75 pounds at the end. Even those extreme photos of anorexics you see online would have looked healthy compared to this... 😢 It’s going to be hard to forget any of it, that brutal stretch right before the end. Honestly, there's enough trauma in such a short window that I could write a book about it; I'm going to need a lot of time to process this and find some peace. Our lives have flipped 180 degrees; it’s just us three kids and our dad, who has never once washed two dirty plates in his entire life.

I feel like this should probably be moved to "that other" thread meant for stories like this...

On another note, I’d love to get involved with the Association's work, but I’m not sure if it makes sense. You mentioned needing activists rather than just "passive" supporters, and since I just turned 18 🙄, I'm not exactly an extrovert (not really 😁) and we haven't had direct negative run-ins with the healthcare system to spark a reaction. What else could I actually do? Then again, we're from New York City, so maybe that's a plus.
How do I even sign up? Do I register through www.zanovidan.hr, and what happens after that?

First off, please accept my deepest condolences. I am so incredibly sorry you’re facing a tragedy like this at 18. Losing a mother is always too soon, and no matter what stage of life you're in, a loss like this feels premature. At 18, it’s truly devastating. 😢 Hang in there. Believe me, as hard as it is now and as much harder it might get, you will survive this. You’ll come out stronger and more mature than peers who haven't walked the path you've had to walk.

Regarding working with the Association, first, join as a regular member (the dues are $17), and then come to the assembly on October 2nd. All the details should be posted on the Association's website soon.
Being only 18 and lacking experience isn't a barrier to being an activist. None of us knew anything when we started; you learn by doing. You actually have an advantage because you'll have people here to show you the ropes of civil society, unlike us pioneers who basically had to bash our heads against a brick wall to figure things out. 😁
I'm glad you're feeling motivated. I hope that, just like it did for me, this gives everything that happened a higher purpose—allowing you to honor your mother's memory by helping someone else extend their life or, at the very least, ensuring they get a dignified departure.
Hope to see you soon 🙂

Hannah Newman43 said:My mom had surgery for breast cancer five years ago. Over the last year or two, her tumor markers have started creeping up again—just by about 2 or 3 points each time. The second to last time, she was right on the edge (24, with the limit being 25), but now they've climbed even higher (27). Is it possible for these numbers to just keep rising slightly like this without it actually meaning the cancer is coming back? Thanks...

A rise in markers can indicate a recurrence, but it isn't a guarantee. That's why you need to get her in for a follow-up immediately to see what's actually going on. Think of these markers as a way to track things; the reagent is essentially detecting the concentration of malignant cells in the body. Right now, the marker suggests that something might be happening because that concentration is slowly increasing, and you need to verify that as soon as possible!

Angela Wright said:A rise in markers doesn't necessarily mean everything has returned. However, you shouldn't wait. Go get checked immediately to see if there's actually an issue. These tests work by monitoring concentrations; if the marker is climbing, it might suggest those levels are creeping up. It needs to be verified as soon as possible.

😢

She has an appointment in a few days, but I can't help the constant worrying while we wait. Thank you so much for the response.

Last time her level was 24 (with a limit of 25). It has been rising gradually, and her doctor hasn't mentioned anything concerning yet...